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Faces of hope

Alexandra’s Story

The diagnosis came as a shock… Our little three-year-old Alexandra suffers from a disease that I didn’t even know existed before, bilateral linear scleroderma. Those who have suffered great hardships in their life will certainly relate to the difficult time I’m going through.

Along with the numerous heart-searching questions and concerns, ever so slowly the anxiety has started to set in and find its way into my life, my days and even some of my nights…

As I get worn out from multiple medical appointments, countless tests, and endless meetings with a variety of specialists and other specialty healthcare professionals, I experience a roller coaster of mixed emotions, torn between hope and despair. I feel as if I am running a marathon without even knowing where the finish line is and what awaits me at the end of this journey… And in what condition I’ll be when I finally reach the finish line. And what if there has never been, nor will there ever be a finish line?

The bilateral linear scleroderma of my little girl has become the primary focus of my life, but increasingly I realize that I’m way out of my depth. It’s also because I have to be there for my two other angels, Samuel Jack, her twin, and Jacob, 17-year-old, her big brother, as well as my spouse and father of my children. So, I need to pull myself together, find the energy to bring out the fighter in me and face the challenge ahead. I will fight for my little Alexandra.

I try to take stock of the situation, assess the positive and the negative in this life’s journey. Alexandra’s spirit, her thirst for life, her playfulness, her resilience, give me a lesson in life, a shining example of courage and inspiration! All this despite intravenous therapy, subcutaneous injections, medications, occupational therapy, episodic pain due to scleroderma per se, and visible, sensitive band-like indurated skin lesions on her little body. Yes, she will sometimes feel irritated, express her disagreement, have insomnia; still, over the coming weeks, she too will, ever so gently, learn to tame the “beast” and discover the resilience and inner strength that lie within all of us and can be called upon even in the toughest of times. I’m also sure that the struggle will make her stronger and better prepared for life’s difficulties. My little champion is fighting, and I’ll be right at her side, supporting and looking out for her.

I shall conclude by saying that through this personal hardship that life has thrown at me, I never lose sight for a moment that my daughter’s scleroderma is highly treatable, and that through cutting-edge research and care provided by highly specialised and dedicated medical specialists and nursing personnel, we benefit from the most advance medical treatments available. Thus, I am confident that as time goes on, Alexandra and all children with scleroderma may look forward to a brighter future! At least, that’s my fondest wish.

Kelly Marquis

Interview by Christiane Dubreuil